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The handle http://hdl.handle.net/1887/96239 holds various files of this Leiden University dissertation.
Author: Dijkhuis, R.R.
Title: Autism in higher education : an investigation of quality of life
Issue Date: 2020-06-09
Autism in Higher Education
An investigation of Quality of Life
Renée R. Dijkhuis
Renée R. Dijkhuis
AUTISM
IN HIGHER EDUCATION
An investigation of Quality of Life
Renée R. Dijkhuis An investigation of Quality of Life A U TIS M IN H IG H ER E D U C AT IO N
Autism in Higher Education
An investigation of Quality of Life
Renée R. Dijkhuis
Lay-out and printing by Optima Grafische Communicatie (www.ogc.nl)
Autism in Higher Education
An investigation of Quality of Life
Proefschrift
ter verkrijging van de graad van Doctor aan de Universiteit Leiden, op gezag van Rector Magnificus prof.mr. C.J.J.M. Stolker,
volgens besluit van het College voor Promoties te verdedigen op dinsdag 9 juni 2020
klokke 10.00 uur
door
Renée Richarda Dijkhuis
geboren te Arnhem in 1989
Promotor
Prof. dr. H. (Hanna) Swaab Prof. dr. W.G. (Wouter) Staal Co- promotoren
Dr. T. B. (Tim) Ziermans | Universiteit van Amsterdam Promotiecommissie
Prof. dr. M.V. (Maretha) de Jonge Prof. dr. C.J. (Carolien) Rieffe Dr. K.B. (Kristiaan) van der Heijden
Prof. dr. H.M. (Hilde) Geurts | Universiteit van Amsterdam Prof. dr. L. (Lieuwe) de Haan | Universiteit van Amsterdam Prof. Dr. J.I.M. (Jos) Egger | Radboud Universiteit Nijmegen
This study is funded by the scientific board of JADOS, supporting research in autism.
Table of ConTenTs Chapter 1 General Introduction
Chapter 2 Self-regulation and quality of life in young adults with autism enrolled in higher education
Chapter 3 Autism symptoms, executive functioning and academic progress in higher education students
Chapter 4 Social attention and emotional responsiveness in young adults with autism enrolled in higher education
Chapter 5 Emotional arousal during social stress in young adults with autism en- rolled in higher education: Insights from heart rate, heart rate variability and self-report
Chapter 6 Summary and Discussion
Nederlandse samenvatting (Dutch summary) Dankwoord (Acknowledgements)
About the author Curriculum Vitae List of Publications
7 23
43
61
81
101 115 127
133
135
137
Chapter 1
General introduction
General Introduction 9
General InTroduCTIon
“Sometimes it just looks like all people without autism think the same. They intuitively know what is meant when being assigned certain tasks like ‘summarize this article’, or how to act in certain social situations. I try to remember each and every detail of any social situation I’ve ever been in and then, whenever I am in a new situation, all these experiences flip through my head and I try to think of
what to do and how I should act. It’s exhausting.” - Student with autism (26)
Autism spectrum disorders (ASD) are neurodevelopmental disorders, characterized by persistent impairments in social communication and social interaction such as problems in social-emotional reciprocity and in developing, maintaining and understanding relationships, and by repetitive behaviors and restricted interests (American Psychiatric Association, 2013). These symptoms influence daily functioning, well-being and developmental outcome (Baghdadli et al., 2012;
Billstedt, Gillberg, & Gillberg, 2011; Deserno et al., 2018; Gillespie-Lynch et al., 2012; Lee et al., 2008). Previous research shows that better outcomes (for example, in terms of psychosocial health, social/emotional functioning, occupation, friendships and independent living) are as- sociated with less severe ASD symptoms (Eaves & Ho, 2008; Kuhlthau et al., 2010). It has also been shown that, across the lifespan, many individuals with ASD experience a lower quality of life (QoL) compared to their peers (van Heijst & Geurts, 2015). Due to the heterogeneity (Jeste
& Geschwind, 2014) and the developmental trajectory of ASD (Seltzer et al., 2003), symptoms can vary greatly between individuals and across ages for individuals with ASD. It is therefore im- portant to learn more about the impact of ASD and ASD related mechanisms on developmental outcome for different specific subgroups, like in the rather uncommon situation when autism is not associated with Intellectual Disability (ID). While a substantial proportion of individuals with ASD has mild to severe intellectual disability, it is assumed that between 0.8 and 1.9% of young adults meet the criteria for ASD without ID (based on findings in the United States by White, Ollendick, & Bray, 2011). In our studies we focus on the question whether the impact of autism symptoms is important for QoL even in this group of young adults without ID. Fac- tors that are found to be related to poor psychological, social, and adaptive outcomes in adults with ASD without concurrent ID include symptom severity are lower childhood intelligence, nonverbal learning problems and difficulty in cognitive shifting, and negative thinking styles (Zimmerman et al., 2018). According to estimates in the United States, the lifetime recognition of autism spectrum disorder (ASD) is ranging from 1.25% based on 2011-2013 data to 2.24%
in 2014 (Zablotsky et al., 2015) with 1.70 % as the latest estimate (Centers for Disease and Control, 2019). Meanwhile, it is recognized that an increasing number of students diagnosed with ASD enter higher education each year (Gelbar, Smith, & Reichow, 2014; Jackson et al., 2018;
VanBergeijk, Klin, & Volkmar, 2008; White, Ollendick, & Bray, 2011). However, knowledge of
the developmental challenges and the developmental outcome of this group of young adults
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Chapter 1
with ASD who are intellectually competent for enrollment in higher education is scarce. In the current thesis it is attempted to add to the knowledge of factors that contribute to QoL in young adults with ASD in higher education.
Quality of life
ASD is believed to be associated with high risk for poor QoL. In fact, it appears a more ro- bust risk factor for poor QoL in adulthood than other serious childhood psychopathologies like ADHD, disruptive behavior disorders and affective disorders (Barneveld et al., 2014). QoL refers to an individual’s perception of his or her position in life in the context of the culture and value system, and in relation to one’s goals, expectations, standards and concerns (World Health Organization, 1995). A distinction can be made between objective and subjective QoL; living situation or an academic degree are examples of objective indicators and self-reported levels of happiness, pleasure and fulfillment are examples of subjective indicators.
Longitudinal studies have shown that the majority of individuals with ASD and moderate to high intelligence (as indicated by an Intelligence Quotient; IQ) have few close friends and a low employment status in adulthood, and that they are relatively dependent on their families (Barneveld et al., 2014; Howlin, 2000). While not much is known about the QoL of young adults with ASD in the transition from adolescence to adulthood, there is reason to assume that subjec- tive QoL is particularly affected. This transition phase has been found to be extra challenging across various domains (e.g. socialization, independent daily living skills and academic function- ing) for individuals with ASD (Adreon & Durocher, 2007; Kapp, Gantman, & Laugeson, 2011).
In this particular phase of life it is not only challenging for young adults to successfully move out of their parents’ homes, but it also becomes increasingly important to develop social relation- ships to support independent life and to become self-sufficient in everyday life. Academically, it has been found so far that adolescents with ASD generally have a larger risk of repeating courses and dropping out of school without a degree in comparison to their typically developing (TD) peers (White et al., 2011). However, not much is known about the subjective (e.g. how one feels about his or her situation) and objective (e.g. academic progress) QoL of young adults with ASD and average or above general intelligence.
Factors potentially related to QoL in ASD
For students in higher education academic progress is an important marker of QoL. Obtaining a
degree in higher education is known to increase employment prospects during life, also in ASD
(Hart, Grigal, & Weir, 2010; Hurlbutt & Chalmers, 2004; Stodden & Mruzek, 2010). Overall,
youth with ASD, including those with average or above general intelligence, tend to perform
more poorly at school than their TD peers (Ashburner, Ziviani, & Rodger, 2008; Troyb et al.,
2014). Therefore, it is important to evaluate academic progress as an objective marker for QoL
of students with ASD in higher education and to evaluate the factors that contribute to academic
progress.
General Introduction 11
It is expected that self-regulation may be important in determining QoL. Self-regulation can be defined as the ability to control emotions, thoughts and behavior through which an individual maintains balanced levels of emotional, motivational, and cognitive arousal that promote positive adjustment and adaptation as reflected in positive social relationships, productivity, achievement, and a positive sense of self (Blair & Diamond, 2008). While it is not explicitly included in the diagnostic criteria of ASD, regulatory dysfunctions in behavior, emotions and thoughts, that are supposed to underlie problematic behavior, are often observed in persons with ASD (Barrett et al., 2013). Self-regulation difficulties have been reported to be present in children with ASD as early as in the first and second year of life (Gomez & Baird, 2005). In typical development, chil- dren learn to master effective regulation of emotions and (social) behavior during interactions while growing up. Resulting e.g. in being easily comforted after a nightmare, in caring for others when they are hurt, and in initiating play with others. If adequate self-regulation is hampered, this can result in atypical social functioning and social problems. Over the last decades, many researchers have begun studying different domains of cognitive and emotional self-regulation in ASD. Self-regulation can be captured with neurobiological, cognitive, and behavioral parameters.
At a neurobiological level, even before one acts to control emotions or thoughts, basic, pro- grammed processes take place that focus on homeostasis. These include, for example, a physi- ological response to stress (increase in heart rate, rise in blood pressure) and activation of the amygdala. At a cognitive level, executive functions and attention are important. At the behavioral level, self-regulation failure may result in behavioral problems like aggression outbursts and rigid- ity. However, because ASD has predominantly been viewed as a developmental disorder, most research on self-regulation so far has been conducted in children (Mukaetova-Ladinska et al., 2012), which has resulted in an ‘adult’-gap in ASD literature and leaves the question unanswered whether problems in mechanisms of emotional and behavioral self-regulation are still related to QoL in early adulthood, especially if IQ is unaffected.
The aim of the studies reported in this thesis is to learn more about the factors that contribute to QoL in students with ASD in higher education. It is hypothesized that both subjective and objective QoL are partly associated with neurobiological and neurocognitive mechanisms of self-regulation, that are also related to the social adjustment problems in ASD.
executive functioning
In determining which neurocognitive factors of self-regulation might be related to subjective and
objective QoL in ASD, the available literature suggests that intelligence and executive functioning
(EF) are typically strong candidates. EF refers to a broad range of component processes neces-
sary for the control and execution of complex behaviors and includes different domains. These
can be divided into basal regulation functions such as attention, inhibition, working memory
and cognitive flexibility that are important in regulation of emotion and thought, and higher
level/ more complex regulation functions such as planning and problem solving (Anderson,
2001; Pellicano, 2012). On top of the basic regulation functions, these higher level functions are
12
Chapter 1
important in dealing with complex and challenging situations that ask for adaptive functioning.
While it has been found that childhood IQ significantly predicts social and adaptive outcomes (i.e. social relationships, social service use and adaptive behavior) in individuals with ASD (Farley et al., 2009), others have found that poorer planning (and not level of IQ in itself) is signifi- cantly related to worse adaptive functioning and the risk for depression in ASD (Wallace et al., 2016). In children with moderate-to high IQ and ASD it was found that EF predicts emotional engagement, and that emotion regulation predicts prosocial peer engagement (Jahromi, Bryce,
& Swanson, 2013), which in turn could influence QoL. EF subserves successful self-regulation (Hofmann, Schmeichel, & Baddeley, 2012) and has been studied extensively in ASD, although to a lesser extent in young adults with ASD. A growing body of research focuses on EF in adults with ASD but results are mixed. These inconclusive findings originate from incongruent findings across age groups and different samples, which is suggested to be due to the heterogeneity of the ASD population. Next to large individual differences in EF in ASD (Pellicano, 2010), age dif- ferences have been found for specific EFs in ASD (van den Bergh et al., 2014). For children and adolescents with ASD, problems with flexibility and planning are considered most characteristic of the EF profile as evaluated by performance tasks (Demetriou et al., 2018; Hill, 2004; Kenwor- thy et al., 2008). Berger et al. (2003) found that poor cognitive-shifting skills in childhood were predictive of lower social competence in adulthood. In adults, studies employing performance tasks show EF impairments related to cognitive flexibility, the ability to generalize, and to spatial working memory (Wallace et al., 2016). Studies with informant reports of daily EF problems have shown EF problems in children and adolescents with ASD across all subdomains, with a peak difficulty in behavioral flexibility (see for example Granader et al., 2014). EF problems were also found for adults when using daily EF informant reports (Wallace et al., 2016).
Despite the steady accumulation of literature reporting on findings of EF problems in ASD and while significant associations have been found between lower EF (i.e. cognitive shifting skills, planning and inhibition) and poorer psychosocial outcomes (Zimmerman et al., 2017) in ASD, as far as we know the relation between EF and subjective QoL in ASD has thus far only been studied in children (de Vries & Geurts, 2015). De Vries and Geurts found that children with ASD showed lower QoL than typical developing children. Lower QoL was related to higher levels of EF impairments. It is important to assess whether the same relations can be found in young adulthood given the findings that EF impairments in TD children can predict lifelong achieve- ment (Diamond, 2013) and that adults with attention deficit hyperactivity disorder (ADHD) who show better EF enjoy a better QoL (Brown & Landgraf, 2010). Therefore, it is hypothesized that EF may be an important factor determining QoL in young adults with ASD, reflected in a relation between EF and subjective wellbeing.
Executive functioning and academic progress
Even though more students with ASD seem to enter higher education each year, to our
knowledge only a few studies have looked into the academic performance of young adults with
General Introduction 13
ASD in higher education. This is remarkable, since EF development in ASD is often found to be hampered and since it has been shown in typical development that performance-based EF predicts achievement in academic domains over and above general intellectual functioning (Latzman et al., 2009). Tops, Noens, & Baeyes (2014) found a profile of intelligence and memory function that was comparable to TD peers in young adults with ASD and without ID. It was noted that group differences appeared mostly on tasks that rely on the integration of different skills and the authors suggested that this originates from problems in cognitive flexibility in ASD. Also, Shmulsky et al. (2017) found that young adults with ASD in postsecondary education who reported problems with behavioral regulation (self-reported inhibitory control, shifting, and emotional control) were more likely to get low grades than students with ASD who reported adequate behavioral regulation. Therefore, it is hypothesized that EF may be important not only in subjective- but also in objective QoL in ASD, as reflected in a relation between EF and academic progress.
emotion regulation
Awareness of one’s own emotions and the ability to regulate them is a substantial element of self-regulation that determines social functioning. Deficits in emotion regulation may result in being overwhelmed by emotions, which interferes with competent functioning in social situa- tions, and may also impair the overall QoL (Adrian et al., 2011; Mennin et al., 2007; Thompson et al., 2008). Previous research shows that children with ASD have difficulties regulating their emotions (Bachevalier & Loveland, 2006; Loveland, 2005; Mazefsky et al., 2013; Samson et al., 2015; Zantinge et al., 2017). The studies investigating emotion regulation in ASD have accumu- lated over the past few years. For example Montgomery et al. (2013) have reported a significant positive association between self-reported emotional intelligence and quality of interpersonal relations in ASD. They also showed that individuals with greater emotional intelligence had lower social stress, which in turn may impact their QoL. Emotion regulation is a complex and multifaceted construct that involves physiological, cognitive and behavioral processes, which allow an individual to monitor, evaluate, and modify emotional reactions to accomplish one’s goals (Adrian, Zeman, & Veits, 2011; Thompson, Lewis, & Calkins, 2008). The difficulty of many individuals with ASD to adequately use adaptive emotion processing strategies in social situations is suggested to originate from deviant emotional reactivity, attention abnormalities and a lack of emotional insight needed to modify or control the emotion (Mazefsky et al., 2013). It is therefore important to evaluate emotion regulation in relation to daily social functioning in ASD, which may help to explain QoL in ASD.
Emotional reactivity
On a neurobiological level, the autonomic nervous system (ANS) plays an important role in emo-
tional arousal regulation. Before an individual (un)consciously acts to control emotion, internal
regulatory processes at a physiological level take place. When perceiving a stressor, for example
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Chapter 1
a critical evaluation by an audience, self-regulating processes start by automatically activating the ANS (Sapolsky, 1998). Activity and changes in activity within the ANS can be measured by heart rate (HR), heart rate variability (HRV) and fluctuations in skin conductance level (SCL). In times of stress, heart rate accelerates, sweat glands are activated and SCL increases. HR and SCL are therefore indicators of an individuals’ arousal level, and they are supposed to be low during rest. HRV indicates the fluctuation in intervals between heartbeats by measuring activity of the vagus nerve. According to the Polyvagal Theory (Porges, 2007; Porges et al., 2013; Porges, 2001) and the Neurovisceral Integration Model (Thayer & Lane, 2000), HRV is a good marker for investigating adaptive responses in socially dynamic environments. HR is often used to measure arousal or arousal response and SCL is often used as an implicit measure of attention, and cogni- tive effort or arousal (Boucsein, 2012; Critchley et al., 2000). As arousal modulates emotional processing, social cognition and motivational decision making (Damasio, 1994), HR and SCL are important markers to measure behavioral adaptation in socio-emotional contexts.
In response to social stimuli, typical arousal has been demonstrated in adolescents and adults with ASD (Trimmer, McDonald, & Rushby, 2017). Also, typical HR and HRV in adults with ASD dur- ing rest (Smeekens, Didden, & Verhoeven, 2015; Toichi & Kamio, 2003) and in response to social tasks was found (Smeekens et al., 2015). However, when the social task was more stressful, blunted HR reactivity was seen in adults with ASD (Jansen et al., 2006; Smeekens et al., 2015), indicating a decreased physiological response to a stressful situation that might impact behavioral regulation. It is therefore considered important to evaluate the predictive value of emotional reactivity in daily social functioning, when examining QoL in young adults with ASD in higher education.
Emotional awareness
Self-awareness of internal emotional experiences is considered a fundamental prerequisite for adequate coping with emotions and for managing associated behavioral consequences and is therefore supposed to contribute to QoL. Referring to the level of registration and labeling of internal emotional states, we call this emotional awareness. Trimmer et al. (2017) measured self-reported arousal response and found (not controlled for actual arousal by physiological measures) that the ASD group did not differ from the control group in their reported level or labeling of perceived arousal following emotional stimuli. This is in line with Dziobek et al.
(2008), who found that adults with ASD show no differences in rating their own emotional reac- tions in response to emotional photos, compared to controls. However, Bölte, Feineis-Matthews,
& Poustka (2008) reported lower awareness of arousal in adults with ASD when viewing sad stimuli compared to TD controls, which was not reflected in their heart rate (which was equally high compared to TD controls), suggesting deviant experience of emotional arousal in ASD. In line with this notion, studies looking at self-reports of individuals with ASD have found that they are generally less able to identify and describe their own emotions (Hill, Berthoz, & Frith, 2004;
Samson, Huber, & Gross, 2012). Additionally, autism symptom severity has been associated
with greater skin conductance responses (SCRs) to nonsocial than to social stimuli (Singleton,
General Introduction 15
Ashwin, & Brosnan, 2014), which is supposed to reflect the failure to adequately orient towards socially salient information. This could be framed as reduced social motivation (resulting from lower levels of arousal), another factor that might impact social awareness, which is consistent with other studies finding less motivation for social situations in ASD (Chevallier et al., 2012). It therefore seems important to evaluate emotional awareness in addition to emotional reactivity to social situations to estimate emotion regulation in young adults with ASD.
social attention
Previous research shows that children with ASD experience difficulties in recognition of facial emotions in others, which may partly be due to social attention problems (Gaigg, 2012). This atypical attention towards faces resulting in social sensitivity problems in ASD has been found to persist into adulthood (Baron-Cohen et al., 2001; Riby & Hancock, 2008) and is also evident in individuals with ASD and average or above general intelligence when more sensitive measures are used (Fletcher-Watson et al., 2009). Importantly, when more dynamic social stimuli are used, i.e. with greater resemblance to real-life interactions, individuals with ASD appear to focus sig- nificantly more on the mouth, body and objects compared to controls, and significantly less on the eye region (Klin et al., 2002), which is considered important in understanding social informa- tion of others. Moreover, fewer fixations on the eyes have been correlated to autism symptom severity in ASD (Speer et al., 2007). In a review by Chita-Tegmark (2016) it was concluded that social content is a significant predictor of social attention in ASD and that differences with TD individuals are larger when the social stimuli are more complex (e.g. more than one person), referring to more difficulty in processing of social essential information in ASD. Therefore, social attention is used as a marker of social sensitivity in our studies.
aims and outline of this thesis
In Chapter 2 the question whether self-regulation (emotion processing skills and daily execu- tive functioning) is related to subjective QoL in young adults with ASD in higher education is addressed. Self-regulation and subjective QoL were assessed through self-report in a group of students with and without ASD who are enrolled in higher education. Research in this specific group of young adults with ASD and average or above general intelligence is scarce, but as low QoL and problems in self-regulation have been reported in both children and adults with ASD, we hypothesized that the young adults with ASD would report lower subjective QoL and that this might be associated to less well developed emotion processing and EF skills than in their TD peers.
In the next study (Chapter 3) it was investigated whether EF can predict objective QoL in higher education students with ASD in addition to autism symptoms. Academic progress was used as an indicator of objective QoL, and was evaluated 6 months after the EF measurements.
Both self-reported daily and (cognitive) performance-based EF were assessed. We hypothesized
that EF would predict objective QoL, over and above autism symptoms.
16
Chapter 1
Chapter 4 addresses the question whether emotional reactivity, social attention and emotional awareness are different in young adults with ASD in higher education, compared to their typically developing peers. While many studies show deviant social behavior in individuals with ASD, the underlying mechanisms of socio-emotional information processing are understudied in this population of young adults with ASD and average or above general intelligence. The socio- emotional environment was simulated by dynamic video clips with highly emotional content.
Emotional responsiveness was measured with skin conductance reactivity (change from baseline to emotional phases) and social attention was measured with eye tracking. Based on previous findings, we hypothesized that young adults with ASD would show less social attention and less emotional reactivity compared to their TD peers.
The final study (Chapter 5) focuses on whether stress influences emotional reactivity differ- ently in students with ASD, compared to controls. The contribution of the autonomic nervous system during emotion regulation in ASD was tested by comparing physiological reactivity dur- ing a stressful social situation (public speaking task) between young adults with and without ASD.
For emotion regulation during stress, HR, HRV reactivity and self-reported emotional awareness were measured. Again, we hypothesized to find less emotional reactivity in young adults with ASD, compared to their TD peers.
In Chapter 6, we summarize and discuss our findings, including reflections about future research avenues and clinical implications.
All participants in the ASD group were recruited through Stumass. The ‘students with autism spectrum disorder’ (Stumass) project was established in 2009 in the Netherlands, to improve independent living amongst young adults with ASD enrolled in higher education. Young adults who have an ASD diagnosis and who are enrolled in higher education in the Netherlands can apply for the program. Once enrolled, young adults can choose to live in a so-called ‘Stumass- house’ with other students, or receive ambulatory care while they are living (semi) independently in the city of their higher education institution. The students receive guidance in increasing their resilience and daily skills that are necessary for an independent life and for finishing their studies.
All students enrolled in the Stumass program at the time of the study initiation were invited to
participate. For the control group, TD peers were recruited through advertisements at higher
education institutions in two different regions in the Netherlands (North and South Holland). In
the Netherlands, higher education entails two forms of tertiary education: university education
(“WO”: academic orientated) and higher vocational education (“HBO”: practice orientated) and
participants could therefore either be enrolled in WO or HBO. Students in the Netherlands are
only admitted to higher education with a diploma of the highest levels of secondary education,
or when having completed the first year of mid-to-high level tertiary education. For a student to
advance to these levels of education they are required to master high levels of verbal skills and
they are assumed to have average or above general intelligence levels.
General Introduction 17
As a final note, one will notice throughout this thesis that the terms (young) adults/ students with high intelligence and / or with ASD are used interchangeably when referring to the same sample.
For clarity; the term students is more often used in chapters or parts when the focus is directed
towards the fact that these young adults are enrolled in higher education and related subjects like
academic progress or daily functioning in higher education settings are being discussed. The term
young adults is used when more broad concepts are discussed that might be important in the daily
lives of young adults with ASD, for example with reference to the role of physiological arousal in
socio-emotional contexts. Finally, the terms moderate-to-high, above-to-high, normal, above average, high
and higher IQ are used interchangeably when referring to the individuals with average or above
general intelligence that participated in our studies. Only in Chapter 2 the term high-functioning
autism spectrum disorder was used. It was decided not to use this term anymore after publication
of this first paper, as we found average or above general intelligence a more appropriate term to
describe this characteristic of these young adults with ASD.
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Chapter 1
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General Introduction 19
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Chapter 2
Self-regulation and quality of life in young adults with autism enrolled in higher
education
This chapter was published as: Self-regulation and quality of life in high-functioning young adults with autism. Dijkhuis, R. R., Ziermans, T. B., Van Rijn, S., Staal, W. G., &
Swaab, H. (2017). Autism, 21(7), 896-906.
24
Chapter 2
absTraCT
Autism is generally associated with poor functional outcome but little is known about predic-
tors of quality of life, especially during early adulthood. This study was conducted to assess
subjective quality of life during early adulthood in high-functioning autism spectrum disorder
and its relation with self-regulating abilities. Individuals with high-functioning autism spectrum
disorder who progressed into post-secondary higher education (N = 75) were compared to a
typical peer control group (N = 28) based on behavioral self-report questionnaires. The results
indicated that individuals with high-functioning autism spectrum disorder reported significantly
lower subjective quality of life than typical controls (p < 0.001, effect size (d) = 1.84). In addition,
individuals with high-functioning autism spectrum disorder reported more problems with emo-
tion processing (p < 0.05, effect size (d) = 0.79) and daily executive functioning (p < 0.001, effect
size (d) = 1.29) than controls. A higher level of executive functioning problems was related to
lower quality of life in the high-functioning autism spectrum disorder group, but no significant
relation between level of emotion processing and subjective quality of life became apparent in
the regression analysis. Our findings show that even in high-functioning young adults with au-
tism, executive functioning, emotion processing, and subjective quality of life are low compared
to typically developing peers. Furthermore, these results emphasize the importance of targeting
executive functioning problems in individuals with autism to improve subjective quality of life.
Self-regulation and quality of life 25
InTroduCTIon
Children diagnosed with autism spectrum disorders (ASDs) face uncertain functional outcomes in adulthood (Magiati et al., 2013). About 60%–78% of people with ASD have poor or very poor adjustment in terms of living independently, relationships, and work opportunities in adulthood (Billstedt et al., 2005; Burgess and Gutstein, 2007; Eaves and Ho, 2008). There is some evidence that higher functioning individuals (IQ > 70) with ASD have a better outcome (Howlin et al., 2004), although the term “high-functioning autism spectrum disorder” (HFASD) has not been used consistently, and the results have been mixed. Longitudinal studies show that a majority of adults with HFASD has no close friends and a low employment status and that they are relatively dependent on their families (Howlin, 2000).
An important part of outcome is the general well-being of individuals, and this is generally referred to as quality of life (QoL). QoL is defined by the World Health Organization (WHO, 1995) as the individual’s perception of his or her position in life in the context of the culture and value system and in relation to one’s goals, expectations, standards, and concerns. In a recent meta-analysis by Van Heijst and Geurts (2014), the developmental trajectory of QoL was studied, and it was concluded that people with ASD experience lower QoL compared to typically developing controls across the lifespan. Despite a growing interest, few studies have investigated QoL in the transition phase from adolescence to adulthood. This is remarkable since transitioning to adulthood is particularly challenging for individuals with ASD (Adreon and Durocher, 2007; Kapp et al., 2011). Not only do young adults move out of their parents’
homes, but it also becomes increasingly important to develop social relationships and become self-sufficient in everyday life.
Regarding the assessment of QoL, a distinction can be made between objective and subjec- tive QoL. Objective indicators of QoL in HFASD (i.e. residential setting and attainment of a diploma) have been broadly studied, while few studies have considered subjective indicators (i.e. self-reported levels of happiness, pleasure, and fulfillment; Costanza et al., 2007). This is remarkable since knowledge about whether and how happiness in school or self-esteem predicts employability or job satisfaction in the future lives of this intelligent but underemployed group of individuals with autism is very much needed (Levy and Perry, 2011; Shattuck et al., 2012).
In a study with 100 families with a young adult relative diagnosed with autism in childhood,
about 91% rated the QoL of their relative with autism as good or very good. However, the
majority of participants required support in the areas of occupational and recreational activities
(Billstedt et al., 2011). While studies like these highlight the importance of assessing objective
indicators of QoL in individuals with autism, solely asking objective questions would miss the
aim of understanding how the individual evaluates the perceived need. Another reason to ask
for subjective experience is the important observation by Renty and Roeyers (2006) that QoL is
more strongly linked to the perception of the availability of the support rather than to the effects
of the actual supporting behaviors in individuals with HFASD.
26
Chapter 2
In determining subjective QoL, it is important to use self-reports. Although one might argue that people with ASD have difficulties in reporting on their own needs, Shipman et al. (2011) found that the self-reports of QoL in a group of adolescents with HFASD demonstrated inter- nal reliability and concurrent validity with parent proxy reports. Moreover, it was found in this study that self-reported QoL is lower than the population mean for adolescents with HFASD.
In a recent study by Barneveld et al. (2014), both objective and subjective QoL in HFASD were measured, and it was found that young adults with HFASD were less satisfied with their work or education, partner relationship, and future perspective than adults with other disorders, such as attention-deficit hyperactivity disorder (ADHD), disruptive behavior disorder, or affective disorders. It was concluded that young adults with HFASD are at relative high risk of poor QoL compared to those with other early onset psychiatric and neurodevelopmental disorders.
A number of studies have attempted to identify predictors of poor outcome or QoL in in- dividuals with ASD. In a recent review by Magiati et al. (2013), it was found that IQ and verbal abilities are among the strongest predictors of QoL in individuals with ASD: a positive associa- tion was reported for childhood IQ with better adaptive functioning and better social outcome in adulthood. Others have suggested that quality of social engagement with peers is a better predictor of adaptive functioning in individuals with ASD than IQ (McGovern and Sigman, 2005). Children with ASD are known to be less accepted by peers and have fewer reciprocal friendships (Chamberlain et al., 2007). This might be explained by difficulties in managing be- havior and emotions, and this in turn might be due to poor self-regulation skills (Nadel and Muir, 2005). For positive adjustment and adaptation, one needs optimal self-regulation. Self-regulation refers to the cognitive and behavioral processes through which an individual maintains levels of emotional, motivational, and cognitive arousal that promote positive adjustment and adaptation, as reflected in positive social relationships, productivity, achievement, and a positive sense of self (Blair and Diamond, 2008). Self-regulation difficulties are reported to be present in children with ASD as young as 1 year of age (Gomez and Baird, 2005). Although it is not included in diagnostic criteria, regulatory dysfunctions are often observed in persons with ASD (Barrett et al., 2013). For the effortful regulation of attention and behavior, both executive functioning (EF) and emotion processing are important components (Blair and Diamond, 2008). In a study by Jahromi et al. (2013), it was found that in children with HFASD, EF predicts emotional engage- ment, and emotion regulation predicts prosocial peer engagement. Moreover, neurobiological studies show that self-regulation in ASD is related to dysfunctions in certain brain circuits that are associated with social–emotional processing (Bachevalier and Loveland, 2006). Given the knowledge that EF and emotion processing are important concepts of self-regulation that influ- ence adaptive behavior in children with ASD, we chose to focus on these control processes.
EF subserves successful self-regulation (Hofmann et al., 2012) and has been studied exten-
sively in ASD, although to a lesser extent in young adults with ASD. EF refers to a broad range
of component processes necessary for the control and execution of complex behaviors and
includes different metacognitive domains such as planning, inhibition, working memory, and
Self-regulation and quality of life 27
cognitive flexibility (Anderson, 2001; Pellicano, 2012). A growing body of research focuses on EF in ASD, but results have been mixed. Next to large individual differences in EF in ASD (Pellicano, 2010), age differences have been found for specific EFs in ASD (Van den Bergh et al., 2014). Despite the steady accumulation of the literature on EF in ASD, the relation between QoL and EF has thus far only been studied in children with ASD (De Vries and Geurts, 2015).
De Vries and Geurts (2015) found that children with ASD showed lower QoL than control children, and this lower QoL was related to higher levels of EF deficits. It is important to assess whether these same relations can be found in young adulthood given the knowledge that EF deficits in typically developing children can predict lifelong achievement (Diamond, 2013). It has been found that adults with functional problems who show better EF enjoy a better QoL (Brown and Landgraf, 2010).
In addition to EF, awareness of emotions and ability to regulate them is another important element of self-regulation. Emotion regulation can be defined as the automatic or intentional modification of a person’s emotional state that promotes adaptive or goal-directed behavior (Hill et al., 2004). Individuals with ASD have been reported to be at high risk of alexithymia (Hill et al., 2004), which is literally translated as “lacking words for feelings.” The term “alexithymia”
has been conceptualized for reduced emotion awareness as expressed in a reduced ability to identify, experience, verbally describe, and reflect on one’s own emotions (Booth-Butterfield and Booth-Butterfield, 1990). In a study by Berthoz and Hill (2005), it was found that adults with ASD expose a cognitive form of alexithymia, meaning that the conscious awareness of emotional arousal appeared intact, while the intensity of emotions accompanying cognitions was low compared to controls. The failure of many individuals with HFASD to use adaptive emotion processing strategies is suggested to originate from deviant emotional reactivity and a lack of emotional insight needed to modify or control the emotion (Mazefsky et al., 2013).
In this study, we aimed to investigate whether young adults with HFASD experience self-
perceived problems in specific domains of self-regulation and how these problems may relate
to their subjective QoL. To limit the potential confounding effects of verbal skills and IQ on
these parameters, a sample of high-functioning subjects with ASD was selected, that is, those
who had entered higher education after high school. It was assessed whether young adults with
HFASD report more problems in subjective QoL, emotion processing, and EF compared to
young adults without HFASD. The second aim of this study was to test whether levels of emo-
tion processing and EF could predict QoL in individuals with HFASD. In addition to lower QoL,
we hypothesized that young adults with HFASD would report lower scores on EF and emotion
processing than typically developing adults. Finally, it was expected that increased problems with
these self-regulation skills would predict lower subjective QoL in young adults with HFASD.
28
Chapter 2
MeThod
Participants and procedure
The study was approved by the Ethical Board of the Department of Education and Child Stud- ies at Leiden University, the Netherlands. Prior to participation, all participants provided full informed consent. A total of 106 participants (76 HFASD, 30 controls) enrolled in Dutch post- secondary higher education participated in this study. In the HFASD group, one multivariate outlier in the control group was excluded from analysis due to very high z-scores on all measures (>2.5). Of the remaining participants in the HFASD group, 55% were enrolled in universities and 45% were enrolled in higher vocational education (“HBO” in the Netherlands). Of the participants in the control group, 89% were enrolled in universities and 11% were enrolled in higher vocational education. Participants ranged in age from 18 to 28 years (M = 22.12, standard deviation (SD) = 2.28). Of the students in the HFASD group, 67 were males (89%) and 8 were females (11%). Of the students in the control group, 23 were males (82%) and 5 were females (18%). Young adults with HFASD were recruited through “Stumass,” an assisted living program for young adults with HFASD enrolled in higher education where students with HFASD live together with other students in so-called Stumass houses. In these houses, tutors are available for planned and unplanned care during weekdays. The goal of Stumass is to reduce dropout rates in education and increase independence among students with HFASD. Young adults can only enter the Stumass program when they obtain a clinical diagnosis of autism, based on full agreement between two board-certified psychiatrists. These Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnoses were retrieved according to the Diagnostic Statistic Manual criteria (customary at the time of referral) with semi-structured, DSM-focused interviews, observations, medical records, and structured questionnaires. Criteria for inclusion were (1) age between 18 and 28 years and (2) no axis II DSM diagnosis of mental retardation (IQ < 70) in childhood, and for the control group, students from universities and higher vocational education were included unless they reported having received a formal psychiatric diagnosis during their lifetime. All young adults with HFASD attending the Stumass project at that time (about 200 students) were invited to participate in the study, and the students who were willing to participate returned an informed consent to the investigators. The questionnaires were bundled and sent to their houses.
The students in the control group were recruited through mouth-to-mouth advertisement in
the cities of Leiden and Amsterdam. After signing the informed consent, the questionnaires
were sent to their homes with a return folder enclosed. The HFASD individuals participated
voluntarily, and control participants received a €10 reward voucher after they had returned the
completed questionnaires to the University of Leiden.
Self-regulation and quality of life 29
